Merryn Crofts - media and inquest

But a pity, that again, mention of Annabel Senior's death, in 2003, has been omitted:

https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/

Published 26 July 2006

Not, sadly, the first

From Richard Senior

Your news item claims that Sophia Mirza’s death was the first in the UK to be ascribed to chronic fatigue syndrome (24 June, p 7). Untrue. My wife died of CFS in January 2003, in north Wales, and the coroner entered CFS as the cause.

 

What has been done since 2010 to advance knowledge of ganglionitis in ME whilst money has been spent researching the effect of standing on a bit of paper and shouting stop.

The cynic might think it is a case of "don't look in case you find".

It may be that the earlier findings of one case in four are exactly in line with expectations if broad criteria were used, as they no doubt were.

 

What "relevant" is decides a doctor, and in my experience, symptoms/findings are often classified as irrelevant. My experience is also that only the most basic tests are performed - no checks for small fiber neuropathy e.g., only rudimentary ENG, but claiming everything is perfect with the nerves and that ENG would show any nerve disease, no thorough check of muscle metabolism, just EMG with the claim that would rule out every muscle disease, only most basic lab tests of liquor and then saying there is absolutely nothing wrong, waving away MRT findings or whatver. Rechecking my documents I found per chance that 3 years ago a doctor diagnosed disc prolapse with a degenerative disc; today I have different sensations in my legs, but this doesn't necessarily come from the dics. I also have scoliosis (not primary), but according to a neurologist 80% of the population have this and it's not important. Aha!

There are a lot of non-sense doctors out there, sorry to say so.

 

Thanks, I am glad they have put it in the print edition as well. It’s interesting to note that there were no comments under the online article. I am sure people did comment so the Daily Mail almost certainly have not allowed them as it is rare people don’t comment under Mail articles.

 

@Dx Revision Watch, Merryn’s family kindly explained to me today that they are aware of this case and have established that although it is mentioned on her death certificate, unfortunately it is not classed as her official cause of death. They agree of course it should have been.

 

I think there is a risk in this approach in overlooking the fact that probably for many of us parasthaesiae represent the ever present cause of awareness of our illness. When one is lying awake at 3am, motionless, with no intention of moving much for another few hours, it is not fatigue that one is aware of, but parasthaesiae.

One can live with that. What I find incomprehensible is that although the parasthaesiae are only a particular expression of something that is going on, there seems to be no interest in following the evidence and considering their position in the chain of causation and what might be linked to them, and how.

EDIT for some, of course, the overriding awareness may be of pain, but either way,there are times when fatigue is a minor factor in the condition.

 

The Times has an article today. One needs to register to read the whole article.
ME sufferer who was dismissed as hysterical vindicated in death

 

Have posted whole article in a new thread. MOD- do we need to combine.

 

The ME Association and Press Coverage of Merryn Crofts Inquest by Dr Charles Shepherd | 28 May 2018

http://www.meassociation.org.uk/201...s-inquest-by-dr-charles-shepherd-28-may-2018/

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Reflective comments

ME Association reporting of the very sad circumstances surrounding the death of Merryn Crofts, along with the update from the Coroner’s Inquest that was held on Friday 18th May, has raised a number of important issues and concerns, particularly on our social media…

 

My two cents here: although her findings might not explain all her (ours)symptoms, they are one more piece of information in this puzzle called ME.
We have PET data from Japan showing brain inflamation, Liquor exams showing altered cytokines compared to controls and the clinical findings of pain and disestesias/parestesias.
So I think it´s important
I wish there is more data to come regarding pathogens, vírus especially.

 

Merryn Crofts is the second person ever to officially die of ME in the UK. Her mother and sister speak exclusively to the programme.

Charles Shepherd and MP Carol Monaghan are also interviewed.

Anna Foster 26/07/2018

ETA:
- First section about ME begins at 10.17 min with Merryn's sister and mother
- Charles Shepherd at 26.17 min
- after the interview with dr. Shepherd there is news etc but starts up again at
2h 10 min with a repetition of the conversation with Merryn's sister and mother
- MP Carol Monaghan at 2h 14 min
- 2h 17 min Ben - MD and ME patient talk
- 2h 19 min Lisa full time carer for husband with ME

The story about Merryn is heartbreaking. The sister and mother is doing an excellent job telling her story.

Is this a programme many listens to?

 

Is there any more after the first bit ends at about 34.00?

 

Yes, I am listening through it now and writing down the times for the ME sections, Will post them soon

ETA: Have edited the first post in the thread.

 

I liked it too. Well done!

The only thing I am a bit uncertain of was dr. Shepherd talking about prognosis. As far as I know it is not documented that young ME sufferers have better prognosis? But at the same time I understand why he stressed that it is rare to die of ME and many patients improve some over time. I am sure Merryn's story can be very frightening to hear for parents of children with ME, children/adolescents with ME and anyone who are about to familiarise themselves with the disease.

 

@Kalliope Thanks for posting!

 

Sounds like Carol Monaghan was cut short for the usual rubbish Govt statement.

eta: also noticed that although they repeatedly say Merryn was only the second person to have ME put on her death certificate, they never say who was the first, (ie Sophia Mirza). I would like them to broadcast her name; or are they scared people might Google it(?)